apnea countdown, continued

All day long, I agonized over my last post... I don't like to complain too much about my experience, and yet again, I'd like to paint a realistic picture of what this has been like for me, for us. I'd like to think that someday, I will be able to take what I've learned here and help someone else get through their own NICU circumstances. If that's a little too ambitious, then maybe more simply, I'd just like to be able to record my experience, for myself, for my boys, for my family and friends. That experience, like many others life brings, is shaped with so many facets of emotion and thought.

These days, I don't have much time to process, or to think out how to say things. I'm weary by the time I get home from the hospital at night, and if I use the computer at all, it's to quickly check email, then to edit photos, and lastly, to put up a blog post. Then of course I also have to pump for the boys, as soon as possible after I get home, then again before bed, and if I'm lucky enough to drag myself out of bed at 3 or 4 in the morning and again at 6. It's hard to get up and sit alone in a room with a breast pump in the wee hours of the morning... I'm assuring myself that while it will still be hard when the boys are home, their cries and hunger will leave me no choice, and so it will be in some way easier. At the very least, I will be interacting with my children, and not a bunch of plastic parts. You know what I mean.

As the boys have become more alert, I've been looking for some simple
black and white "toys" for them to look at. This morning, Laurie brought
over this beautiful mobile she made just for the boys.

max, enthralled.

Anyway, this leads me to my dilemma about my post from last night... and my perhaps dramatic way of requesting that people not remind me to see the silver lining. I don't necessarily have a clear thought about how I should have written it differently, but the alternative would have been for me to write nothing at all, and I'd rather be able to just put out an emotional plea that comes from a slightly irrational state.

Last night I didn't tell the whole story. The whole story would have included the part where I got to the hospital and was told that they both had had apnea spells, but there was no documentation of the spells except in the computer... and the artifacting from the heart and respiratory leads can look like a spell where none had actually occurred. In other words, the night nurse had made no notes of intervention, which is very, very unlikely in the case of an actual apnea event that would have lasted over 30 seconds. I never was able to get an answer as to what had happened or if the spells had been authentic, leading to some rather profound frustration at the idea that they might be spending extra time in the hospital when they could safely be home with me.

Today, Max & Shoghi had their carseat tolerance tests -
which sits them in their seats for 90 minutes to see if they
have any apnea spells at this angle.
Both boys passed, but Shoghi will go home in a car bed,
since he is too small for the carseat.

Today's request, then, is rather different... it's a request to simply be with me, with us, through this next phase of the countdown, without congratulations or too much excitement. Today, the doctor told me that, barring any issues, Shoghi and Maxwell will be coming home on Saturday. Now every hour is fraught with excitement and fear, all at once. Will I be buckling seatbelts on my little guys on Saturday, or sitting at their bedside again with a heavy heart? I tried to put my faith in them having grown out of their apnea, and went tonight for a last-minute run to get supplies... baby bottles, waterproof pads, sleepers, and more diapers. Me... shopping for these things for my babies, my boys, my sons. It makes my chest tighten with emotion just to say the words "my sons."

This part of the journey is one I haven't yet shared with many outside my immediate circle... this feeling of disbelief, this sense that, without having them with me physically, they are not actually my children. It is something that I can almost not touch with words, a feeling that is vague and sad and something like instinctual, and perhaps explains some of the pain of this separation we've had for the past month. Suffice to say, I have been holding my breath for 4 weeks now, waiting for the moment when I can take my babies into a room and close the door behind us, to lie with them and really look at them, to hold them and share the knowing that we are indeed a family.

Hopefully that sacred day is less than 36 hours away. Sit with me awhile, then, if you don't mind... wait and hope with me that when I write next, it will be with my beautiful sons, home at last.